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swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,576
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I saw the pulmonologist this week. They did an arterial blood gas and spirometry. They have stopped doing the full up Pulmonary Function Test because it just wears me out too much and does not provide meaningful information.

The good news is that my arterial blood gas numbers are ok. In particular, oxygen saturation and co2 levels are acceptable (though co2 has been climbing, it is still acceptable). The doctor says no bipap yet.

The bad news is my best spirometry result for forced vital capacity was 31%, which is a slight decrease from the previous visit.

His conclusion is that my lungs are great but the bellows mechanism does not work very well at all:)

My wife peeked at the doctors notes and read that I am in denial. I really don't think I am. I accept I have a terminal illness and the end will not be pretty. The doctor has had very frank conversations with me (both with and without my wife being present) about what the end will be like.

Shortly after diagnosis I decided that I would live each day to its fullest and intentionally have a cheerful attitude, accepting my limitations with as much grace as I can muster. Certainly I fall short sometimes, but then I pick up the pieces and move forward the best I can. I believe this comes across as denial sometimes and perhaps that is what the doctor is sensing. Yet, his note makes me rethink the level of acceptance I really do have. I will continue to ponder that.

The doctor is near insistent that we move to a substantially lower elevation. We live at 8500 feet and he wants us near sea level. His opinion is that I don't need to be at a lower elevation right now, but that when there is a respiratory crisis I will. Since we can't predict when the respiratory crisis will occur, he says move now.

I love the mountains and living at high altitude. My friends and my church are here. I don't plan to move. I would rather have higher quality of life here than take steps to live longer in a place I don't enjoy as much. My wife, on the other hand, has already contacted three real estate agents about listing our house for sale.

Hmmm. We will have to see how this plays out:)

Steve
 
We are at sea level. We will be out in the mountains in June and July so we will have a comparison. My husbands pulmo is of the mi d that as long as he uses his trilogy as much as he needs, it is fine to be at elevation. He says enjoying life is most important. Just our two cents.
 
It is hard when the seemingly best medical answer takes us away from what we love and it is your right I think to choose ( with your wife's input)
FVC 31 does not qualify for bipap? If it because of your blood gas results? I am virtually certain my sister got hers with a 50
 
Steve, Is your pulmo used to treating als patients? Like Nikki said, at fvc of 50% they gave my Steve a bipap.
 
Steve,

Don't let that doc make you rethink your attitude. You stay as positive as you can. I guess he would rather you be in a deep depression and sobbing uncontrollably at your appointment so that he could feel better knowing you've "accepted" your diagnosis? That's a bunch of horse sh%#! Man that just burns my shorts :evil:
 
My steve's numbers are like yours. But they are just numbers. I just take the paper with all the measurements and file it. Most important is how you feel and if that is changing.
 
My wife peeked at the doctors notes and read that I am in denial. I really don't think I am.

Sorry but that had me rolling laughing Steve.

But seriously - maybe that comment is written because he has told you about the altitude affecting your breathing and you don't want to move.

I'm going to thrown in my 2c and then you of course have the right to make your own decisions.

PALS should not overuse muscles that are already affected as this fatigues them and causes them to waste faster. Bipap has shown to be of best effect when started early and it can stabilise the progression for a while as it rests the breathing muscles. If it is started later it is just a palliative measure and the PALS may not adjust well to using it at all.

If you are after Quality of Life rather than Quantity, then weighing up where you live is so much more important. Will it kill you faster staying at that elevation - no one can know for sure until after you pass maybe. Will you have less quality if you move to lower elevation even if you live longer? Only you can answer that question. I'm very much in favour of Quality.

I know this pulmo has to tell you that stuff about elevation, but I do wonder about his experience with ALS. Can you see anyone more experienced?
 
I want to thank everyone for chiming in. It is great be in a place were folks have a deep understanding of what I am going through.

My pulmonary doctor is great. He works at an institution that is often rated as the top pulmonary institution in the US. He is one of the top (if not the top) pulmonary doctors at that institution. He has decades of experience with pulmonary issues caused by neuromuscular diseases, including ALS/MND. He was the first doctor to tell me I had a progressive neuromuscular disease. That was long before the MND diagnosis.

I have a great rapport with him. He is a good guy and I trust his judgement. However, I will continue to make my own decisions (in consultation with my wife). I think he understands that.

Nikki, you guessed right. He said that because my blood gas numbers are ok that bipap is not needed.

I do not struggle with breathing, I just can't take an even moderately deep breath. The only times I have a bit of a challenge is when I exert myself a bit or lie on my back. Apparently my lungs do a great job with the little bit of air I do suck in:)

When all this started I was completely unaware that I had breathing problems until the first Pulmonary Function Test (PFT). It was kind of funny. I went to the Mayo clinic and underwent an amazing array of tests. The one I was sure I would pass with flying colors was the PFT because I have lived at high altitude for most of my adult life. Well, I did not do so well.

For now, I will continue getting ready for our trip to Yellowstone. We leave in a week. We are still debating if we will camp or stay in a hotel (we have reservations for both). Both the hotel and the campsite are at a lower elevation than our house:)

Thanks for all the support. I really appreciate it.

Steve
 
Although I love to camp, that is a fair amount of work. A hotel is easier and will be less of a fall hazard. I would really consider the hotel.
 
>Both the hotel and the campsite are at a lower elevation than our house

:)
 
Steve, while I'm sure your pulmo is top-notch, he's treating a patient, not a disease, certainly not CO2 levels and sats, which don't signify when muscles are being asked to do more than they will soon be able to and are doing it hundreds of times a day. Our pulmo here, also well-known in MND, mistook me initially for "either a RT or an engineer" so I am going to venture to say I have some expertise.

Apart from what I think I know, including >20 yrs of looking at by-minute BiPAP data (which, BTW, most pulmonologists don't spend a lot of time with), I haven't seen any relationship between SpO2/CO2 and the need for BiPAP on this forum, nor seen any prospective trial literature justifying the "wait" that you describe. Sats drop when you're not fully oxygenated, at which time you are already starting over the cliff because sats themselves compensate to an extent, and CO2 rises may not reverse themselves completely over time because they reflect that a delicate biomechanical switch has been tripped.

Yes, your "trained" lungs are compensating for now. When they stop, you may have minimal warning and it's no time not to have a BiPAP by your bed. And even camping, batteries still work.

I'm going to play a guilt card now. Would you want your wife to wonder for the rest of her life if your having a BiPAP on the table would have made a difference, and whether she should have focused on that rather than selling your house?

Everything I know about MND and your breathing as you have described it, says you should have, if not, use a BiPAP. The altitude is a red herring; settings can be adjusted to deliver the combination of pressures that you need. I wouldn't move a muscle from the home you love. But I'd have that machine by your side, attached to a mask or a mouthpiece, so it's there when you need it. I suspect the pulmo will write it for you if you ask (ask for the Astral if you do), and I know most other docs of any sort will. I wonder if he and/or you considers it more invasive or cumbersome than it really is. PAP technology/form factors have changed over the years. Most of the angst on these threads around BiPAP is around humans, not machines.

Best,
Laurie
 
We take my husbands everywhere.There are car adapters, you can use carabiners to attach it to things, its really no problem and gives freedom to get out more. Many have internal batteries and external batteries that clip into the machine which give you 6-8hrs of use without electrical power.

It truly does help.
 
EXACTLY what Laurie said!
 
Gooseberry: I hear you about liking camping but thinking the hotel might be a smarter choice. We have not yet made a final decision, but will soon. Also, thanks for the input on carabiners and and car adapters. I have many carabiners to choose from (from my climbing days):)

Laurie: Thank you for response. I hear it and take it to heart. I am seriously thinking about getting a second opinion on the breathing issues. I will start working on getting the bipap. I have no objection to using it and recognize that I will use one sooner or later.

Tillie: Thanks for chiming with encouragement to listen to Laurie!

Steve
 
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